Chronic pain is something I don't think I have written about before, but it is definitely something I have had to figure out how to deal with. Chronic pain is persistent, long-lasting pain and it can really affect your daily life. In recent years, since beginning to work in the field of psycho-oncology, I have learned more and more about how common chronic pain is in young cancer patients and survivors. Research has show that 20-30% of adult survivors of childhood cancer who are 10 years and 14 years post-diagnosis report pain of some kind of pain (Lu et. al, 2011).Whether it’s because of surgery, neuropathy (a side effect of chemotherapies like Vincristine), or other issues, like back problems (something I deal with because of the number of spinal taps with chemo that I received), you may find chronic pain follows you during and after cancer treatment.

I find it interesting that if chronic pain is something so unavoidable for young people that go through cancer treatment, I just wonder why it isn’t talked about more? I certainly was never warned about it.

Like everything else that I have felt doesn’t get talked about enough, I’m going to try and talk about it here. Being prepared and knowing what you can do to manage pain is so important. There are many things you can try other than just pills to manage pain.

I recently listened to a presentation by a researcher from Stanford who studies pain in young people with cancer. She recommended this interesting video as a starting point to understand what causes us to feel pain and what pain really means:

The video ends with a series of questions to ask your doctor, to find out more about your pain and how to cope with it. It is also important to know that most major hospitals will have psychologists working directly in pediatric or adult oncology that could also help you with coping with pain. Alternatively, your doctor might be able to connect you with a psychologist who specializes in coping with pain at your hospital. If you are interested in seeking out such specialists yourself, good places to look are the websites of major hospitals (particularly ones connected to a big university) since these will be the places where doctors and mental health practitioners, like psychologists or psychiatrists, tend to work more closely together to do pain research. If they are doing pain research, it means they will likely be more aware of the latest and greatest methods available to help you manage pain. You’ll want to look for a place that provides what is called a “multi-disciplinary approach” or involves an "interdisciplinary team," which means they bring together lots of different specialists to give you access to a wide range of potential pain management strategies. You can view the Johns Hopkins Pain Treatment Program or the Blaustein Pain Treatment Center at Johns Hopkins for examples of what types of programs to look for.

Essentially, there are 3 steps to take to begin to work towards coping with chronic pain during or after cancer treatment:

1) Understand what is causing your pain.

Ask your doctor about what may be causing your pain, and whether it means you are safe to move around a lot or participate in normal activities. It may actually be that some activity could help your pain. For example, when my back pain started, it came on very suddenly and I woke up one morning somewhat unable to move my legs or stand up because it caused me so much pain. So, I assumed I shouldn’t move because the movement caused me pain. It was not until after several doctor’s appointments, when I was finally recommended to visit a physical therapist, that the therapist told me that there were activities I could try to actually help decrease or even take away my pain. She gave me stretches to do at home and recommended I go to yoga or pilates classes to strengthen my core muscles. She explained that this could help take pressure off of my back and relieve my pain. Since starting yoga and trying to go to a class 3-4 times a week, I’ve had little to no back pain. When I do get back pain, I’ve also found that the deep breathing exercises that I learned through yoga can help me move through the pain. Long story, short, get as much information about your pain and what you can do about it from your doctor or other healthcare provider, like a physical therapist.

2) Figure out what more can be done, or what other specialists you could see.

If you feel like current methods are not helping, talk to your doctor about who else may be able to help you manage your pain. Are there other specialists you can see? What pain management options are available to you? For example, if you feel pain medication is making you groggy or makes it hard to function in daily life, is there a psychologist or psychiatrist that specializes in chronic pain who might be able to help you manage your pain in ways that may not require such strong medication?

3) If necessary, take matters into your own hands.

If your doctor if unable to make or simply doesn't make recommendations you find helpful (which unfortunately can happen sometimes), don't be afraid to take matters into your own hands. You may also find it helpful to do this even if your doctor has provided you some suggestions. Seek other opinions. Talk to a range of providers - physical therapists, general practitioners (family doctors), oncology specialists, or psychologists or psychiatrists. Maybe visit a dedicated pain clinic that provides a multi-disciplinary/interdisciplinary approach to care, which would give you access to that range of providers. Do your own research and take to the internet to see if there may be others who are dealing with a similar problem that may have helpful advice to give you. For more information on how to advocate for yourself, you can see my previous posts about developing self-advocacy skills, like information-seeking skills and negotiation skills.

I appreciate the end of the “Tame the Beast” video, when the narrator says it is important not to give up hope. Managing pain as a cancer patient or survivor is a lot like managing a diagnosis of cancer. Like cancer, chronic pain is not something you expect to deal with at a young age. To get through both a cancer diagnosis and the onset of chronic pain, you have to stay positive, be persistent, and never give up hope that it will, somehow, all work out. If you have gotten through diagnosis (which you likely have, if pain is an issue you are dealing with), it means you already have the positivity, persistence, and hope you need. You may just have to put all of that energy towards a different purpose, to find ways to manage and cope with any pain that you experience.

In December, I was fortunate to find my dream job and began working as a research assistant with the Behavioural Sciences Unit, proudly supported by the Kids with Cancer Foundation, in the Kids Cancer Centre, at Sydney Children's Hospital. I am honored to be a part of such an incredible group of researchers who are doing outstanding work to address the needs of and challenges faced by children, teen, and young adult cancer patients, survivors, and their families. I was especially honored to have the opportunity to write a blog post for the BSU's website about my personal experiences with cancer. You can find the post, and learn more about the BSU, here.